Three-year-old Haydn Weymes cannot walk or talk and has never been able to eat a solid meal. He has an extremely rare chromosome disorder - 18q deletion.

Every cell in Haydn's body has genetic data missing, giving him serious disabilities, including mental impairment, poor muscle tone, bad hearing and eyesight, and digestive problems which mean he cannot take food by mouth.

Instead, he must be fed into his stomach by tube and now needs equipment costing thousands of pounds to improve his life.

His father Richard Weymes, 35, a BT engineer, and mother Alyson, 35, care for him at home in Hindley Close, Crawcrook, Gateshead, but are hoping to move to a new property they can modify.

Richard is planning a sponsored cycle from Edinburgh to Newcastle in August to raise money for the adaptations.

He said: "Every cell in your body has 45 chromosomes, but there is a lot of genetic data missing from Haydn's number 18 chromosome. They call it a deletion or severe break point in the chromosome and each cell in his body has this deletion, so there is no cure.

"This has left him severely disabled. He is unable to walk or crawl and cannot support himself. He is unable to take food orally, so he is fed into his stomach via a gastric tube.

"He was able to eat certain things, such as yoghurt, for the first few months, but he has serious digestive problems, which is why he needs the tube.

"He needed a six-hour operation two years ago, which included a gastrectomy, because of this. He has also had three operations for rectal prolapses."

Richard and Alyson had not been prepared for Haydn's disorder because it was not picked up on pre-natal scans. He said: "When Haydn was born they could see something was wrong and he was immediately transferred to the special baby care unit at the Queen Elizabeth in Gateshead.

"He ended up in the Freeman as he also had two holes in his heart and the doctor thought he might have Down's Syndrome. But when the test results came back and they said it was 18q deletion even the doctor admitted he had never heard of it.

"We were referred to the Centre for Life, but felt totally in the dark because no one seemed to know anything about the disorder. Luckily, we met Dr Michael Wright, who really reassured us and put us in touch with charities and support groups who bring families together who are going through the same thing."

Richard said: "We are about to move to a new house where we can build an extension to give Haydn his own specially designed room with a through lift from downstairs.

"This room will have a specialised bath with a hoist, an oxygen machine, standing frames and a special bed. What we are raising the money for is to fund a sensory area within his room as he is most at peace when he is under flashing lights.

"Alyson gave up work to care for Haydn full-time and she really keeps the ship afloat."

The couple have two other children, Olivia, 14 months, and Jessica, six.

"We have no specific target for the bike ride, but we can only get a limited grant from the council for the extension and most of it will go on the lift ... so we're hoping to raise as much as possible."

Sponsor on weymesy@btinternet.com

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Little Zoe receives her donor heart

An 18-month-old girl who was at the top of a European heart transplant list after suffering six heart attacks has found a donor, doctors have confirmed.

A hospital spokeswoman said that Zoe Chambers was stable following a transplant and that the operation had gone quite well.

Zoe, from Hull, had a heart transplant at Newcastle's Freeman Hospital early yesterday.

The hospital said it would not be releasing details of the donor family.

Doctors said that Zoe, who was born with a heart valve which was too narrow, had only weeks to live unless she had a transplant.

A heart became available last week but it was too large. Her situation was so desperate, she was put at the top of a European waiting list for a donor last weekend.

Zoe's mum Julie Chambers, 33, said the youngster was fighting hard. Zoe was not expected to live beyond a few months, but now staff and her parents are hoping the transplant will be a success.

Julie has been married to Rob, 34, for seven years and the couple also have a four-year-old son Dylan.

Before the transplant, Zoe had been fitted with a £100,000 Berlin Heart which kept her alive.

Dr John Smith, a consultant paediatrician at Newcastle's Freeman Hospital said: "Zoe Chambers received a heart transplant last night and her condition is stable.

"We are satisfied with her progress thus far.

"The operation was carried out overnight.

"We are aware that organ donation is not fashionable and is not done as frequently as we would like.

"We would urge everyone to consider it."

Zoe's parents were not available for comment yesterday.